CALLING ALL LC SURVIVORS!!!

Recommended Posts

My name is Connor Dillon, and I am a senior at Menlo High school in Atherton, California. I am currently taking a course on Anatomy and Physiology. The main overarching assignment for the class is being diagnosed with a chronic condition, such as a type of cancer. We have to research, pretend to live with, and promoting awareness for our disease. I was assigned Non-Small Cell Lung Cancer, and was wondering if anyone on the forum would like to tell me there story? I understand that this subject matter is sensitive, and don't mean to offend anyone. I just wish to gain a better understanding of how you have delt with your disease.

Share this post

Link to post

Share on other sites

As a patient with NSCLC, this sounds like a great assignment! This is certainly one disease that desperately needs more awareness. There are lots of survivor stories. You might look Under Lung Cancer Support Community, on the left-hand side of the screen, and check out Survivor Stories. There are also some short videos on you tube, as well as the My Story heading on this message board. I'm sure many others will be along shortly with perhaps more specific info on where to look for information.

Share this post

Link to post

Share on other sites

I will try to copy and paste a "survivor" article that Katie Brown put together from a questionnaire I filled out. Hope this is of some help.

Survivorship

March 14th, 2011

Survivorship means to me – living as well as you can, and enjoying life to the fullest, for as long as you are able.

I was first diagnosed in March, 1998 and again with a new lung cancer in November, 2008.

In 1998, I was diagnosed at stage 2A. I had surgery (left lung removed), and no chemo or radiation. I inquired about chemo or radiation, but was told by the doctors that it would not be a good idea.

In 2008, I was diagnosed at stage 3B. I had concurrent chemo/radiation. I started with Cisplatin/Etoposide, but could not tolerate it. Chemo was changed to Carbo/Taxol.

After surgery in 1998, I did very well with one lung. It took about a year to really adjust, but with only a few exceptions I could do what I had been able to do before.

In 2008, I had severe side effects with the Cisplatin. I did much better with the Carboplatin. My red blood cell counts got very low. I had a loss of appetite, but still managed to gain 15 pounds by eating lots of peanut butter, which seemed to be the one thing that agreed with me. Lost my hair, had severe fatigue, but got through it.

I was lucky. My husband was self-employed and so was able to take some time off. My daughter-in-law also was a great help. I don’t know how I would have managed without them.

There is no support group in my area, nor really any useful resources. The best resources I have found are LUNGevity and GRACE.

I would really like to have a lung cancer support group locally.

After I returned to work following surgery in 1998, one person told me that she had no sympathy because it was my own fault. Most people were polite enough not to come right out and say that, but you could tell that is what they were thinking. I have learned to basically ignore it. If they seem receptive, I try to point out that there are people dealing with lung cancer who never smoked, and that in the case of those who did smoke, the tobacco companies have a great deal of responsibility in getting young people (I was 13 when I started smoking) hooked on nicotine. I’ve found that with people who are not receptive and have made up their mind, there’s just not much you can say.

Lung cancer truly teaches you to live in the moment, enjoy today, and not worry so much about tomorrow. It also reminds you to be grateful for what you have, as you see so many who have it much worse.

For me, because I was a smoker, the worst thing has been seeing how my illness has affected my family. I can remember telling them that it was “my business if I wanted to smoke” – well that’s not true. It has affected everyone in the family, but obviously my husband the most. Although I am doing well right now, I know he worries about my becoming sick again. So the concern is always there. Also, my breathing problems have a definite effect on our lifestyle. He is active and in good health, so it really makes me feel bad that there are so many things we aren’t able to do.

I want to tell people that lung cancer can happen to anyone, and there needs to be much better screening methods, as well as more effective treatments. I want to make sure they understand that no one deserves lung cancer, and that it could be your sister, brother, husband or child. I want them to understand that many people who did smoke were addicted to the nicotine by the tobacco companies, and others only smoked for a short time years prior. You cannot blame anyone for their disease – it does no one any service. If smoking were the only cause of lung cancer, then all smokers would have the disease – actually the majority of smokers do not get lung cancer. I would point out the many environmental factors and the problem with Radon, which many people are not aware of.

Although we are doing more for cancer research all the time, it is still not enough. There needs to be much more research done because the survival rates of lung cancer have not changed much in the past 40 years and more people will die from this disease if we don’t make sure there is enough funding for more research.

Share this post

Link to post

Share on other sites

Wow, Diane what an incredible story. I am truly blown away. I have one last quick question. Towards the last part of the passage you mentioned something about breathing problems? Were these due to the cancer, or were they before diagnosis?

Share this post

Link to post

Share on other sites

Lungs are amazing organs. When they remove one, the other lung expands to fill in - of course there is still loss, but there are many patients who have lost lungs or part of lungs and still run, bike, etc. The radiation treatment did the most damage, but it was necessary.

Share this post

Link to post

Share on other sites

I've taken a very long break since I last visited this site....various reasons, but a post on fb today reminded me I needed to check in and share my story since so many were seeming to need to hear stories of hope. So....here I am, still here nearly 8 years after diagnosis, and though I am living with COPD and having to adjust my lifestyle to that reality, it's still a blessing that I'm still here to be able to bounce my new grandson on my knee

Share this post

Link to post

Share on other sites

I'm still here, too! I was diagnosed in May 2003 with Stage 1b NSCLC. Surgery (Upper Right lobe) and chemo . Eighteen months later the cancer returned to my upper Left lobe. Stage 1b, surgery, and chemo again. I've been free of that cancer since the second surgery. However, there are many kinds of cancer. Now I'm fighting stage 4 uterine cancer.

Share this post

Link to post

Share on other sites

I haven't been here in sooo long, probably 2009. I forgot my user name and/or password at some point (typical ) and then became absorbed by the distractions of life...

I am happy to report that, as far as I know, I am still cancer free, coming up on 7 years around July 1. I was dx with nsclc adenocarcinoma, stage 2 A, in June, 2008. Treatment was right lower lobectomy and adjuvant chemo. I know the early dx was likely a life-saving blessing along with prompt, aggressive treatment.

I expected to keep on living so I started graduate school in May of 2009, and finished my masters in December, 2011. I started a new profession as an Educational Diagnostician in August, 2012. I am very happy that I made that change--still in a public school working in special education, but not as a teacher anymore.

There have been more mostly positive life changes. Two years ago I ended a 13-year relationship that was never right for me in the first place and soon after that I decided to cease most contact with my 2 remaining immediate family members--mother and sister--due to their tendencies to become emotionally abusive without any warning. I had my quota of that growing up. Such behavior is unacceptable and I finally realized it was better for me to remove myself from their pathology. I have seen my mom a few times but I maintain a strong boundary on the relationship.

I've had to deal with my own serious mental illness, ADHD, chronic pain management, serious allergic reactions to 3 antibiotics, 2 more surgeries (cervical spine and sinus), and frequent illnesses, some serious, but I'm still alive and kicking! Except for 2 years I took off while finishing my degree I've worked full-time since 12/2008. I'll be 62 in November and 3 years from retiring. I have moderate COPD but don't need O2. I just can't do vigorous cardio due to SOB (I have 55% lung capacity). When it gets hot the ozone where I live causes breathing problems, so I avoid outdoors when levels are high.

My biggest problem is a serious lack of social support and social isolation. My son and grandkids live in Virginia, so there's no family near. Since ending the relationship I've not had much energy for "getting out there" to meet new people after work and taking care of the house and all. I live 30 minutes from the nearest city (which isn't all that attractive to me anyway) and there's nothing happening in my little town! I am not a conventional person and my life has been anything but ordinary, so I don't feel like I can relate to a lot of people where I live. I need to finish my home projects, sell the house which takes too much upkeep, and move someplace that fits my needs better!

Thanks for letting me go on . I know I shouldn't complain. I am grateful to be alive and in fairly good health. I know it's up to me to continue to make the positive changes I need and be patient because the outcome is not in my hands. I believe there is a reason for everything that happens. Those beliefs are what helped me accept the lung cancer diagnosis and go on to live in spite of it without fear or dread of what was going to happen next. Peace of mind is the best thing.